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Tecumseh said:
Marinol is an appetite stimulant. If you're already hungry, it probably won't do much for you.

The tinnitus/hearing loss is a common side effect, typically with platinum based chemotherapies like carboplatin or cisplatin. Has that been part of your regimen?
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Yes sir it has been.   I've been dealing with it for so long now I don't even notice until I try to sleep.

Thanks for your help and the texts. ;)

 
da_budman said:
The times I have had medically induced everything tastes bad itis the 2 things that still tasted good:  Milk and pineapple......  Not a clue why but Ive lived on a milk and pineapple diet a couple times.  p.s. royally pissed me off when I forgot and wasted some serious coin on a nice steak that tasted awful due to a medical procedure.  
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Love pineapple but have sores in my mouth so that's a no go.  The Boost>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>Ensure helps with that and tastes pretty darn good!  As long as I don't smell it first. ;)

 
Glad to hear active treatments are over! Hurray! My infusion center didn't have a bell but I did get flowers from them and a certificate of completion congrats from rad oncology. 

Very sweet making your wife a birthday dinner. But she and your docs are right. You need to listen to your body and rest. To help combat fatigue, which I still have from that time and from the meds I'm on, I'd do chair exercises. Now I force a daily walk.

Praying scans will show great results!

❤🙏🏻❤🙏🏻❤

 
Not sure how I missed this.  Awesome to hear you're progressing here.

And, I'm not ashamed to say this, you make that face net a thing of beauty.  

 
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Sand said:
Not sure how I missed this.  Awesome to hear you're progressing here.

And, I'm not ashamed to say this, you make that face net a thing of beauty.  
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:lmao: Thanks GB.  Wish I could wear something like that when I leave the house.  Not exactly comfortable with how I look right now and frankly it's gross too.

 
Binky The Doormat said:
that sucks about spooking Cal
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I meant to respond to this at the time. 

There's good reason to be "spooked".  I look grotesque but getting a little  better each day.  (FWIW, hard to believe but he's a senior in HS this year.  Big kid, 6'1 245.  Tried everything to get him on the football field. :) )  The biggest issue is that the radiation caused the incision in my neck to open up ever so slightly which then fills with ####.  I didn't notice this until a few ago when I went to pick my youngest up from school who wasn't feeling well.  The women in the office are always pleasant and sometimes flirty to the point of sexual harassment which of course I very much enjoy.  When we got to the car I saw my reflection in the driver side window and there was #### all over the place.  So gross. Then there's the multiple chins. I haven't been out in public since. 

As you know from the GMTAN Cal has had no shortage of obstacles in his life because of Autism.  However thanks to so many wonderful case managers at school he has conquered many of them.  He even went to Homecoming last weekend which is a BIG deal.  It used to freak him out being anywhere a crowd was present and loud music would set him off in a very bad way.

He has made 5-6 close friends that he hangs out with on a regular basis.  Heck, a couple weekend ago he left Friday afternoon and we didn't see him again until Sunday afternoon.  He doesn't drink or do drugs.  Just a good kid.

ETA

####=pu$$

 
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So awesome to hear about Cal.

As for your looks, the great news is that it’s now Halloween season so with a minimum amount of creativity you can make this work for you and just roll with it for the next few weeks. We’re also entering turtleneck season, so you got that going for you too.

 
GroveDiesel said:
So awesome to hear about Cal.

As for your looks, the great news is that it’s now Halloween season so with a minimum amount of creativity you can make this work for you and just roll with it for the next few weeks. We’re also entering turtleneck season, so you got that going for you too.
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@El Floppo probably has a spare scarf or two he could send you.

 
I saw one of the doctors on my team this Monday afternoon and not much of an update but wanted to pass on what I learned. 

Good news is that my blood work is improving better than expected. I'm still not there and need my WBC/RBC counts up but he was very pleased.

I told him I was very depressed lately with my lack of energy, only 3-4 hours a day at the very most of feeling well, and sleeping all the time.  Admitting weakness isn't something easy for me to do but when the stakes are this high I didn't want to omit anything. He pointed to the blood work as something that should be really encouraging and I needed to have patience. He also stated it's going to take months for me, and my taste buds, to recover from what they put my body through and reiterated that it was remarkable of how good of shape I was in. 

The next leg of this marathon is in November when they run a scan(s) to see where I'm really at.  

As always, much love and thanks to all of you!

 
St. Louis Bob said:
I saw one of the doctors on my team this Monday afternoon and not much of an update but wanted to pass on what I learned. 

Good news is that my blood work is improving better than expected. I'm still not there and need my WBC/RBC counts up but he was very pleased.

I told him I was very depressed lately with my lack of energy, only 3-4 hours a day at the very most of feeling well, and sleeping all the time.  Admitting weakness isn't something easy for me to do but when the stakes are this high I didn't want to omit anything. He pointed to the blood work as something that should be really encouraging and I needed to have patience. He also stated it's going to take months for me, and my taste buds, to recover from what they put my body through and reiterated that it was remarkable of how good of shape I was in. 

The next leg of this marathon is in November when they run a scan(s) to see where I'm really at.  

As always, much love and thanks to all of you!
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I cancelled soccer practice tonight because it might rain.  You.....you are WAY tougher than me, GB.  Keep on fighting, rock star.  I root for you every day.

 
St. Louis Bob said:
I saw one of the doctors on my team this Monday afternoon and not much of an update but wanted to pass on what I learned. 

Good news is that my blood work is improving better than expected. I'm still not there and need my WBC/RBC counts up but he was very pleased.

I told him I was very depressed lately with my lack of energy, only 3-4 hours a day at the very most of feeling well, and sleeping all the time.  Admitting weakness isn't something easy for me to do but when the stakes are this high I didn't want to omit anything. He pointed to the blood work as something that should be really encouraging and I needed to have patience. He also stated it's going to take months for me, and my taste buds, to recover from what they put my body through and reiterated that it was remarkable of how good of shape I was in. 

The next leg of this marathon is in November when they run a scan(s) to see where I'm really at.  

As always, much love and thanks to all of you!
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I'd be depressed too.  It sucks. It's not weakness to admit that something nobody has ever had before sucks.  It's a clinical observation.  You're toughing it out through some really difficult treatment and you're doing awesome .  That's a huge deal.  You can handle really sucky things for a while but it gets harder the longer you go.  And when you compare it to the start it you think that you've changed.  You haven’t. You're enduring the accumulated effect.  It's an unfair comparison but totally natural.  Just understand that it's amazingly impressive to get through this like you are.  A lot of us couldn't. I couldn't do what you've done.  I know being less of a ##### than me and@General Malaise is a low bar but keep it in perspective.  This is hard and you're doing awesome. 

 
I just want to echo the sentiments of others and say that what you're doing is far and beyond what some of us could tolerate with the patience and good humor you display here whenever you check back in. Keep it up, SLB. Thinking of you. 

 
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bostonfred said:
I'd be depressed too.  It sucks. It's not weakness to admit that something nobody has ever had before sucks.  It's a clinical observation.  You're toughing it out through some really difficult treatment and you're doing awesome .  That's a huge deal.  You can handle really sucky things for a while but it gets harder the longer you go.  And when you compare it to the start it you think that you've changed.  You haven’t. You're enduring the accumulated effect.  It's an unfair comparison but totally natural.  Just understand that it's amazingly impressive to get through this like you are.  A lot of us couldn't. I couldn't do what you've done.  I know being less of a ##### than me and@General Malaise is a low bar but keep it in perspective.  This is hard and you're doing awesome. 
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:wub: & :lmao: my brother

 
I had some CT scans run on Tuesday and had an appointment with the oncologist late Wednesday afternoon.   Great news, they believe they got all the cancer! 😊 We won't know for sure until a Dotatate scan, which is like a PET but more detailed, in 3 months.  Going in the right direction and if that scan confirms no cancer, I’ll be ringing that Siteman bell loud!!

I went to sleep last night around 10pm and slept until 2pm.  I answered some e-mails and then went right back to sleep until 4:30pm.   I have struggled with sleep my whole life, so this is a new territory for me.  I again was told to be patient and it’s my body healing.  I joked to my wife last night that maybe I was going through puberty again.  She replied I didn’t make it through the first time.  I didn’t argue. 😊 Doc said I should be back to normal, well my "normal" lol, in 3-6 months.  He told me the same as the specialist a few weeks ago and that I need to have patience.  Same with my taste buds and facial hair.  At least he admitted that was easier said than done! 

There’s still severe pain in my left eye which began at the same time I discovered the tumor last year.  I will have an appointment with a neuro ophthalmologist soon and hope and pray that can be patched up too.  I also will have PT on my neck so I look less like a walrus. 😉

Once again, thank you for the prayers, good vibes, love and support.  This has been a long, and many times, lonely fight.  All of you have constantly reminded me I’m not alone though with your greeting cards, e-mails, calls and texts.  It keeps giving me the strength to fight on.   Thank you.

All of my love to you and yours!

 
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